Hi, 

I’m not sure how much advice I can give, but I’m in the same situation. I’ve had three ca125 tests now and each time they’ve increased 37 then 43 now 51. My scab was clear too and now I’m waiting on next steps but my gynae has referred me back to the gp for next steps. It’s very frustrating, I would say call them and ask for next steps as you’re unhappy with no answer for your raised levels. 

Hi 

my levels are at 147 and I phoned the doctors and they said they are happy with all my scans and tests and are planning to retest in a few months. 

they said I shouldn’t worry about it but I can’t help but worry that it may turn in to cancer 

have they said what will be happening with your raised levels x

I'm in the same kind of situation, but with me I was having bowel flair ups and I have pain on my left hand side, so the DR thought she should check my CA125 levels in case it was my ovary. My results came back raised at 45, and I was so scared waiting for my ultrasound expecting the worst and my ultrasound was clear. My smear was taken around same time too, which was normal. They decided to retest me, and it's 41, lower but still raised. They think it's more to do with my gut now, but I worry that the high CA125 could be related to another type of cancer like bowel cancer. I'm having colonoscopy and endoscopy this Wed, as I've had bleeding in stool since april and suffering with right sided pain around rib and around right side of belly button, and indigestion and flair ups etc. I know it's good I'm getting them done but I worry so much, esp with my CA125 bring raised also. 

Hi I have just been reading this thread, I just posted before I saw this, I have been having vaginal bleeding post menopause and am on the two week referral for scan. The interesting thing is nica00 saying possible bowel, I went through the colonoscopy endoscopy rout last year after changes in bowel habits and positive for blood in the stool, all tests came back normal thankfully, however my inflamatory markers and liver fucntion are very high. I had a big bowel bleed this week which initially confused me with the vaginal bleed but after i worked out what was what it might be that the vaginal blood was released whilst passing a stool (sorry tmi) nica00 are they scanning your gall bladder?

I also have problems with my digestive system and under gastro 

i got referred do to being bloated, nausea and generally feeling full quickly when eating also having a pain in my right side 

as you say it’s just a real worry with the levels being so high 

It’s all very strange isn’t it, how the body works. I did actually have high placelets signifying inflammation after one of my flair ups - the flair ups would start as constipation and indigestion and then sickness and weakness then diarreah in the final stages then I would go back to normal. I haven’t been right since the last flair up however but my placelets did go back down to normal after but my CA125 was then raised so they went down the gyno track but that was all fine. They did actually check my gallbladder hassledmum cause they first thought it was gallstones but i had an upper abdominal ultrasound and all was fine. Sometimes the pain is so intense on my top right and bottom right hand side plus Iv had a head ache which started in my neck but now gone behind eye and round side of ear for 2 weeks and dr thinks it’s nerve pain so I’m on tablets for that which aren’t working. It just seems odd that my CA125 is raised and I’m not well - it just feels like there’s inflammation somewhere and Iv not been right for a few months now. Did they say what the next steps are now for you rocky?

My inflammatory levels were normal 

i still feel generally unwell too I feel tired, bloated stomach and still have really bad nausea so I think I’m going to go back to my doctor 

My abdominal scan was also normal just have a small cyst on my liver which they are not bothered about 

they have only said the next steps are they will take my levels again in 2 months and see what they are and if it is my normal levels 

I am so confused and am lost of what they can do next or weather I just have to live with it have they said what your next steps are ? And are you under gastro as that’s who I am under and they say they can’t find nothing wrong either 

that’s the thing, I think that too. Do I have to live with this pain forever! Now they’ve checked gynological and upper abdomen and ruled out anything there, the focus is now on my gut. I’m having an endoscopy as I was having bad reflux before and indigestion , having this procedure the same day as colonoscopy this Wednesday tho. I’m worried in case they find something but in a way I don’t want them to find nothing as this will not sort my pain out. Have you had a colonoscopy at all? IF your bloated and in pain there it could be another option for you. It’s weird I’m dreading it but looking  forward to it at the same time cause hopefully I’ll get answers. I hope it all goes well for you, hate the constant waiting around and referrals 

hi to both of you, i had both tests last year, endoscopy revealed gastritis, inflamation in the stomach and the colonoscopy a small harmless polyp but the bleeding is still going on. I am seeing a doctor privately on wednesday (self funded) I have ehlers danloss syndrome which can cause fragile blood vessels also gastric issues to see if he has some answers, I have to wait over a year to see someone on the NHS for this. My Endocrinologist who is handling the bits that have been damaged in the pituitary by radiotherapy wonders if the blood in the stool is caused by the severe nose bleeds I have lost 10 pints since Jan and am awaiting an arterial clip via ENT. again they think it's an area damaged by radio but also the scan oicked up an enlarged subarrachnoid space so who knows whats going on. It is the tummy and bleeding issues that concern me most as I have a deep lower right side discomfort. The gyno said scan was normal which is good but something is not quite right. I can help with hints and tips for your colonoscopy or you can find it on my post from last year

Thanks for messaging me back, seems like a long road for you. I hope you get some answers soon. I had a colonoscopy and endoscopy  last Wednesday. They removed a benign hyperplastic polyp quite soon into the procedure but he knew right away it was hyperplastic. They also found a hiatus hernia which explains the indigestion and chest pain I was getting. What I don’t get is the right side pain on upper and lower abdomen and Iv been getting a right sided pain on head for over 3 weeks. I had inflammation on CRP bloods last week and they were raised but had them done again and they came back normal. Seems to be the story for me lately. Do you know if benign polyps can bleed? As Iv been having blood on stools once a month but very small amount. I had it the day before procedure - wonder if the removal will change that now.